I've had 3 days of tears and sleepless nights since finding out my CA 125 has risen from 9 to 12 to 21 after 10 hopeful weeks on Rucaparib. Might not appear to look very alarming but my last recurrence showed a similar rise and a CT scan revealed 3 tumours. The largest being 12cm. 6 months of Carbo/Caelyx reduced them by 2 thirds but the tumours still remained. The surgeon has told me she's sorry but the tumours are in a place she just can't get to (in my upper abdomen close to the spleen) so a second operation is out of the question and probably wouldn't increase my life expectancy. I'm having a CT scan during the next few weeks to see exactly what is happening and in the meantime carrying on with the Rucaparib. I'm so afraid the parp isn't working and few options are left. Niraparib didn't work for me. I was taken off it after drastic blood results. It's only 5 months since I finished my last chemo. Has anyone out there had a similar experience and can give me strength and hope to get through this.
Love from Angela xxx
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Hi Angela. I can’t help with experience but I wanted to say I’m sorry you’re worried and I hope you’re wrong about what the numbers mean. I would feel the same about having to possibly start back on chemo. Maybe there’s a trial you could get on? Anyway I’m sending hugs and hope. Xx
I get days like that too. It’s impossible not to and really wretched.
We started Rucaparib at about the same time. I have my blood tests and oncology appointment next week. I haven’t been feeling brilliant with nagging aches in lower back and abdomen.
Half way through I was taken off it and restarted on a lower dosage. I wonder what they can do if the high dosage causes bloods to crash and the lower doesn’t keep it at bay?
Interesting to see someone else has fairly low CA125 when the cancer is very much in evidence. Mine only went to 25 on recurrence.
It’s a difficult one isn’t it! The CSN try’s to make feel better when it’s under 35 and says well it’s within normal but for you and me it’s above normal and a pending recurrence.
9 sounds good. I hope it stays that way. Or even lower Di
I have the same. I am taking Rucaparib but CA125 is slowly rising. I assume the tumours are slowly growing too. I am on a lower dose to get the balance right between benefits and side effects. PARP inhibitors are inhibitors, they just slow everything down and inhibit the cancer from growing and spreading, so it is doing its job. I have incurable cancer so know that is all I can expect. I just have to concentrate on being grateful for every good day.
I realise Rucaparib isn’t a cure. I suppose we just hope they shrink the cancer a little or at least keep it at bay. The thought that the tumours are still growing Is hard to bear. I am grateful for every good day I assure you but like all of us we hope to have many more.
Love from Angela xx
I had Carbo/Caelyx for my first recurrence and had a partial response, I was given Niraparib, and felt really well, but a midway CTscan showed it wasn't working as my tumours galloped on. I was devastated as I had convinced myself it was the magic pill that was going to keep me in remission for years! But hey ho it wasn't to be, so I picked myself up and dusted myself off and started all over again, and as my son said "what else can you do"
I am back on the chemo train and although not happy about it, grateful to be given some more time, just wish it wasn't during lock down, life can be very cruel, but then I think about all the other people so much worse off than myself and I realise I have much to be thankful for. Good luck x
I came off the Athena trial as I had a reoccurrence and it turned out I was on Rucaparib So it didn’t work for me. I’m now on weekly Pacitaxol which I’m hoping will keep the cancer at bay. There are some trials around for immunotherapy drugs that maybe worth investigating if you haven’t taken one yet? Wishing you all the best. Jane X
Hi, I have stabilised after a reoccurrence & then 6 chemo Carbo Platin/Caelyx. However I thought I was going onto Niraparib, not so cos am not NED!!!
They propose to monitor me for 3 months then CT scan. I am trying to find an alternative & wondered if anyone knows of an Immunotherapy drug available for Stage 3 which has stabilised or a Clinical Trial? Iside X
Well I’ve calmed down somewhat and trying to think there may be more treatment available if the Rucaparib is definitely not working. If it’s chemo again it’s doable but my oncologist told me he can’t keep pumping poison into me forever and we have to die sometime so I tend to have that on my mind. He’s very kind but tells me as it is. That’s why I, like you had such high hopes for the various Parps. We knew they weren’t a cure but just hoped they’d hold back the need for more chemo.
How are you feeling today?
I’ve forgotten for a minute if you have much knowledge of trials. My hospital Here in the North , is a cancer hospital and does have a trials department but nothing has ever been mentioned to me. Maybe I’m too old.! This hospital believes in quality of life rather than lengthening life whereas The Christie and Royal Marsden will try their best to keep us alive as long as possible and try anything to help us. That’s how I see it anyway. My surgeon who is so lovely, will not re-operate because she says she can’t get to the tumours and she doesn’t ever touch the spleen. Which is an area where my tumours are.
Tell me more about you and your situation. Sorry I’ve gone on a bit here and you only asked me how I am.
1. About surgery: my team does not believe in second surgeries unless you have been in remission for at least 2 years. (6 months is my record), but that is where Prof Christina comes in. If it’s operable, she will try her best.
2. Spleens; many of the ladies in here had their spleens removed in their first debunking surgery.
I had mine removed when I was 19 years old, because it was filtering out too many of my red blood cells (I have a hereditary blood disease).
It’s an important organ, but we can live without it.
I think it is a slightly more complicated surgery, to hook up all the blood vessels.
Both myself and my daughter’s were performed by heart surgeons.
3. Quality vs Quality: I get furious whenever a doctor brings this up, especially as except for rare occasions, I am usually feeling quite well and am my usual energetic vital self.
My mother kept all her marbles until the last few months of her life and was a vital 98 year old when she passed away this March.
I always planned to live as long as she did, but this cancer has put a bit of a damper in that, but I still want to live as long as I possibly can!
Dear Laura, right I’d better get back on the rollercoaster and keep going.
Never heard of Gem until you and Lyn mentioned it. Perhaps it’s an omen.
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I believe Professor Christina is in London. I’ll have to see if there’s a “Professor Christina“ at The Christie but if they can just get rid of the tumours by blasting it out with something I can cope with the other bits and bobs surrounding them. A pipe dream I suppose.
I’ve asked about radiotherapy but they said no. They must have their reasons.
I remember you had Plasma Jet surgery which is also a no no for me.
There has to be something out there for all of us.
BTW. I doubt if you’ve ever been a “plain anything” and undoubtedly you never will be.
Thank you for your reply. If you're interested in exploring possible clinical trials, you can discuss this with your treating team. They will be able to advise you about any trials that you may be eligible for. Trials have their own criteria, but for adult trials there is a lower age limit of 18 and there isn't usually an upper age limit.
If you would like us to research potential trials that you could ask your Consultant about, or information about being referred to a trial centre, please get in touch with us. You can also find our information booklet about clinical trials at:
Hi Angela. How are you? You haven’t posted for a while. I’m having all sorts of ups and downs between my Rucaparib and the stent nephrostomy. I feel like a ping pong ball and with both oncology and urology asking for blood tests almost weekly my veins are like wriggly worms and I do not want a pic line. Let me know how you are.
Hello again. I’ve had a strange few days filled with confusion. Because of my rising CA 125 After 10 weeks on Rucaparib I was taken off them for a few days. My blood results were ok except the CA 125 had risen slightly. The oncologist prescribed 2 more weeks of Rucaparib until he’d seen the result of my scan which was July 17th. The CSN rang to say the CT scan showed no difference from the previous scan in February when the 3 tumours were 4cm 2 cm and Some scattering across the upper abdomen. The oncologist said he didn’t need to see me until July 30th. I was elated and felt the Rucaparib was doing it’s job. However I’ve been in quite a bit of pain all over my abdomen for several days and now wondering if the cancer is growing elsewhere and cannot be detected on the scan. I know the tumours are still there of course and apparently not growing at an obvious rate but why the pain and why the CA 125 rise from 9 to 23 over the last 4/5 months (which is high for me) . I will just have to wait and see but meanwhile, like the majority of us, I wait In fear and anxiety of what will meet me on Thursday. I’ll let you know as soon as I can.
Lots of love and hope for you and the rest of the ladies watching and waiting.
Hi Angela. I too get pains all over my abdomen, sometimes gripes and sometimes dull like period pains. The leaflet that comes with the Rucaparib gives it as a side affect so that’s probably what it is. Xxx
Good Morning JustKBO! Thank you for replying so quickly. I feel better already although I have a UTI to deal with this morning so not 100%. I hope you’re ok. You seem to have lots to deal with yourself. I’ll let you know what the oncologist has to say on Thursday.
Hello JustKBO, I can’t remember if I let you know about my latest face to face appointment with the oncologist on August 30th.
My bloods were all fine except the CA 125 is still rising. It’s now 27, which is high for me. The CT scan showed no progress in the tumours and no significant change anywhere else so the Rucaparib looks like it’s keeping the tumours at bay but not reducing them. I believe this is how it should be. However the oncologist is concerned about the CA 125 and said I Could go back on chemo if necessary. Which was a relief in a way. I’ve a telephone appointment with him on August 20th and having blood tests prior to this. So yet again it’s a waiting game like it is for all of us. He sent me another 2 weeks of Rucaparib to be going on with So I take that as a good sign. My last CT scan before Rucaparib was January 2020 so perhaps it’s good news that the existing tumours haven’t grown. I know I’ve rambled on a little but because you’re in a similar situation I thought it was relevant. I hope you’re getting on ok with all your treatment. Please let me know. I’ll let you know how I get in on August 20th. Remind me if I forget. I do seem more forgetful since treatment but it could be age related too😊.
Hi Angela. Well I have a similar story inasmuch as I have been led a merry song and dance. As I’ve previously said a month in on Rucaparib my neutrophils crashed and cholesterol shot up but CA125 was stable.
Then My kidney backed up and swelled so I was taken off the Parib until it all settled. Then I was restarted on a lower dose.
A month later I had another urine in fection and hideous pain. I was put on morphine, taken back off the Rucaparib And between A and E, oncology and urology I had so many scans and blood tests and was up and down to the hospital like a yo yo but thé CA125 went down again.
I went back onto the Parib yesterday after aNother course of antibiotics. Oncology don’t attribute the kidney problems to the Parib but urology think it is because everything settles down when I come off it. I think it’s the antibiotics I go on that cure the problem but it is a bit of a mystery. I q
We have now made the decision to stay on the Parib but remove the stent and keep the nephrostomy.
I hate the tube and bag especially in this hot weather but I can put up with it as long as the cancer stays away.
I have to have another kidney related procedure in September so I’ll have to come back off Parib again in two weeks time. This isn’t really good but there’s no other option and this issue has to be resolved for me to get consistent Treatment. 🤞🏻🤞🏻🙏🏽🙏🏽
Try to stay up beat. Let me know about August 20. Stay positive and know that I’m thinking of you and wishing you well.
If you need to sleep but are worrying ask for melatonin it’s natural and works well.
I am at my 4th recurrence. Zejula/Nilaparib did not work for me either. I was taking it after I finished chemotherapy for the 3rd recurrence. I had my 4th surgery and now I am doing radiation therapy.
I hope there is something out there that can help.
I don’t know if you’ll find this helpful so feel free to dismiss it but I’m throwing everything I can at my o c including the protocol in Jane McLelland’s book How to Starve Cancer. My onc has OKd three of the off label common drugs ( repurposed) and things are stable .
It’s worth reading and there are trials on these drugs individually for other cancers. The difference here is using them as a cocktail To block all the pathways the cancer feeds from.
Thank you Alex. I know you have a strong faith in this book. I’ll have another look at the book reviews and what it’s all about. It’s good to look at all options.
Would you be so kind to name the 3 off labels drugs your oncologist approved as complimentary treatment please.
Will you or are you taking them alongside your chemo treatment or while on remission.
I would also appreciate to hear from anyone in the community who used the McLelland's Metro Map protocol or used the services of Care Oncology Clinic in London, who claim to be able to put together personalised protocols of complementary treatments for cancer patients.
My sister's is stage 4a HGS with RAD 51C mutation, she is already on her 3d line of GarboGem chemo since her diagnosis in December'17 .
We are now looking at everything available in addition to conventional treatments to keep her cancer at bay.
We'll be very grateful for your replies, advise, insight.
Yes of course! As well as letrozole the hormone blocker I’m on simvastatin, low dose aspirin and Metformin. OKd by my onc. Jane says you can take them at the same time as chemo and some even make it work better but I didn’t know about it until half way through chemo so waited till I’d finished chemo before starting .
I also take (which he knows about but doesn’t prescribe) fenbendazole, quercitin, berberine, glucosamine, turmeric, and a probiotic, Omega 3 oil, vit b, calcium and vit d , earl grey tea and green tea (Both decaf).
Of course! I’m at Swindon’s Great Western Hospital under Dr Khan . There’s a multidisciplinary team with the Churchill Oxford for most of the cancer diagnosis and genetic testing.
I have found a GP on line who is happy to prescribe the protocol if I need it in the future. I couldn’t get the doxycycline prescribed as there was no evidence based reason they could use but as things are stable at present I’m not really worried and know how to get it if I feel I need it.
I've just ordered the Jane McLelland's book How to Starve Cancer. Should come tomorrow via Amazon Prime. I'm willing to give anything a try. I asked my oncologist about CBD oil but he wasn't very impressed even though I wanted to buy it myself and not have it prescribed by the GP so not sure how he'll react to anything else,
Good luck with your oncologist. I make it clear to mine that I’m seeking his opinion but I also talk about the effect it has on my psychologically if I feel I’m doing the best I can for myself which he can’t really argue with. Stress of not feeling in control can create inflammation and cause cortisol levels to rise which is not good for cancer. So we’ve kind of got an understanding. He prescribes what he can justify under the NHS but I’ve told him if my ca125 increases I’ll be looking to add some of the other supplements and drugs from the protocol like melatonin and doxycycline and I can obtain them from an on line GP who supports the book.
I hope that is helpful. Feel free to DM me if I can help any more.
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I JUST WROTE A WHOLE REPLY TO YOU AND MUST HAVE HIT SOMETHING BECAUSE IT ALL DISAPPEARED?? I WAS WONDERING IF YOU ARE BRCA POSITIVE? I WOULD DEFINITELY GET SCAN SOON AND SEEK A SECOND OPINION. I THINK LINDAURA MENTIONED A DR. WHO IS WELL KNOWN. I AM IN FLORIDA AND ASIDE FROM BEING IN A DIFFERENT COUNTRY, THERE IS N O DOCTOR I COULD RECOMMEND. THE SURGEONS ARE GOOD HERE BUT THE ONCOLOGISTS AREN'T WORTH ANYTHING. I FIND I HAVE TO BE MY OWN ADVOCATE AND BE AGGRESSIVE FOR SCANS AND TESTING. TRY NOT TO WORRY, THERE ARE SO MANY TREATMENTS OUT THERE. I'M SURE THERE IS ONE THAT WILL HELP YOU. YOUR NUMBERS ARE NOT GOING IN A HAPPY DIRECTION, BUT THE CA 125 IS STILL VERY LOW. STILL THINK SECOND OPINION AFTER YOUR SCAN COULDN'T HURT. ALSO, I DO GET SOME BURNING PAINS UNDER ARMPITS (ACTUALLY ON INSIDE OF UPPER ARMS)
FROM TIME TO TIME. I AM OVERDUE FOR PET SCAN BUT HAVE PUT IT OFF BECAUSE OF THIS HORRIBLE VIRUS. I OFTEN READ WHILE LYING ON MY STOMACH AND UP ON ELBOWS. I THINK THE BURNING I FEEL MIGHT BE FROM NERVES BEING IRRITATED.
I have just seen this post and found it so encouraging that I may sleep tonight. I replied to another post you sent to me but this seems to be more informative. I will read it again and think positively about everything you said. I used to be such a confident and assertive person but this dreadful disease has knocked the stuffing out of me. I haven't seen anything from Lindaura (Laura) for a while I hope she's ok.
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Second Reaccurrence
The Waiting Game 
Hi newbie here, worried about CT scan results
Any one else have shrinking tumours with high CA 125?
platinum resistant, cancer back after 4 months 
